What Happened After I Finally Saw a Doctor for the Fatigue I Had Blamed on 'Laziness'
“It just keeps getting worse,” I said to my psychiatrist. I was referring to the debilitating fatigue I had been experiencing for years, but had gotten much much worse over the last year or so. I was on the verge of tears. I was scared. I didn’t know what to do. He had tried so many medications – both of us, or certainly me and him at my prompting, believed it must be my depression causing it. But this time his reaction was different. He told me I needed to see a doctor. I didn’t have a GP, so it was in some ways extremely logical. Though my psychiatrist had done labs looking for anything that might be obvious like anemia or thyroid problems, those all came back negative. I was “fine” as far as we could tell. But both he, and especially my therapist, believed there was more going on.
When I had to miss work one night because I was literally too tired to move, I finally made an appointment with a GP my psychiatrist recommended. I was nervous, because I truly believed it was all in my head. But when I told my therapist that, he finally said what I had been secretly hoping someone would say: “It is clear… something is wrong! And we will keep looking until you find it and fix it.” Yeah, sure, “something” is wrong. But is a physician going to think it’s anything more than a mental/willpower problem? I was about to find out.
I sat nervously waiting, with a letter in hand for the doctor to read detailing my fatigue problem. I knew if I tried to explain it I would fail – so I wrote it all down. He read it, looking up a few times to ask things like “How old were you when this started?” When he finished, he asked a few more questions, and when I couldn’t take it anymore I broke down and said, “I swear to you this is not all in my head, something is wrong.” He paused and looked at me for a moment, then kindly said, “I believe you.”
Those words meant the world. I knew that one way or another we would get to the bottom of this, together. He ordered extended lab work, far beyond the basics I had already done three times before. He told me it could take a week or so because some of the tests he ordered were a bit extensive. I didn’t mind. I would wait. I would wait as long as it took to get answers. But after two weeks without hearing anything I finally emailed his office to ask. The next day my phone rang – it was my doctor.
“All your labs came back great…” I sighed when he said that. But that wasn’t all he had to say. “…except your EB virus antibodies were quite high.” I immediately remembered reading about a connection between the Epstein-Barr virus and chronic fatigue syndrome, and in an instant I knew he had stumbled upon something important. He said that his research so far had indicated that the first line of treatment was low dose stimulants to help treat the fatigue (which I was already on high doses of just to help me barely function), but he wanted to do more research as he felt there might be a better approach than just to deal with the “symptoms.” He promised to call me back later in the week with a treatment plan, and we left it at that. I was both encouraged, and defeated. I was encouraged that he had found something that clearly indicated to him a cause for my fatigue. But I was discouraged that it seemed the only treatment was exactly what I was already doing, with little success.
He arranged to see me in a week, and by the time the day arrived I was a nervous wreck. I so desperately wanted an answer as I sat patiently listening to his explanation of chronic fatigue syndrome and why he was fairly certain that was the problem, as there was quite literally nothing else it could be after all the testing he did. Then he finally got to the part that stopped me dead in my tracks – he wanted to try me on a month-long course of prednisone. For as many horror stories as I had heard about prednisone, I was reluctant. But the fatigue was unimaginable and only getting worse, so I was willing to try anything (and hope I didn’t turn out to be one of those horror stories).
The first day I took it, despite still being tired, I was able to stay awake all day without stimulants, and even go grocery shopping. My immediate fear though was: “What happens when I stop taking it – will I be just as tired again?” I tried to put those thoughts out of my mind and take it one day at a time. Day two was awful. I was exhausted as if I was paying for what little energy I had the day before. I was nauseous and shaky, and I thought surely I had made a mistake. I stayed in my bedroom the entire day, missing work. I could barely get to the bathroom I was so tired and sick feeling. Luckily by day three it evened out. I felt a little better, a little less tired and a little less nauseous. I had to go back on stimulants to stay awake, but I was determined to get through the full course of prednisone and see what it might do.
The next week went by fine and I began tapering off it as prescribed for the next two weeks. All the while wondering a million things like “is it doing me any good?” By the end of the first week I emailed my doctor to let him know how it was going. I knew the stimulants were the reason I was staying awake most of the day, but I secretly wondered if some magic might happen by the end of the course of prednisone to give me back some strength and energy permanently.
Unfortunately the effect was minimal – no magic. But by the time I finished the entire bottle of troublesome little pills, I did seem to have just a small bit of energy back – but more importantly, the downward spiral which had left me practically housebound had stopped. That in and of itself was a big deal. My physical discomfort had lessened, and my strength seemed to have improved a little. But it was marginal at best. Still, it was something, and I was happy to have anything.
It was obvious that it wasn’t a miracle cure, and stimulants were probably going to be the first line of treatment for my chronic fatigue syndrome for a while at least. But the prednisone, for as much as I dreaded the idea of taking it, had given me some small relief (without the frightening side effects I dreaded) – and that was worth trying it for.
My doctor then offered to switch me to a different type of stimulant medication to try to help with the severity of the fatigue, since I hadn’t gotten enough relief from the prednisone to be able to function, and the current stimulant medication I was on only helped some. After consulting with my psychiatrist to make sure there would be no interactions, he called in a prescription for modafinil (often used to treat narcolepsy), and I started it the next day. After three days I noticed it starting to give me some relief from the burden of fatigue, and what had been weeks of utter despair began to have a glimmer of hope. Maybe I am not “doomed” after all. Maybe we can treat this. Maybe we can work with this. Maybe my life is not over.
There is no “happy ending” to the story. I have chronic fatigue syndrome. It didn’t go away, it just got a name (and a doctor to treat it). But the point is that I suffered needlessly for a long time with debilitating fatigue that I blamed on being “lazy.” It wasn’t until I finally saw a doctor who said “this is a real thing” that I began to realize I could learn to live with it – I would have to learn to live with it.
In some ways, it gave me permission to grieve the loss of a “normal” life I once had. And in that grief I found that perhaps it wasn’t the end of the world after all. I have a dedicated physician who is wiling to put in the time to find ideas and treatments to help me live as normal of a life as possible. Just having that is enough for now, because it means that chronic fatigue syndrome may be here to stay, but now I know what I’m fighting, and I’m not fighting it alone.
Chronic fatigue syndrome is not laziness or tiredness – it’s a debilitating monster, with no known cause or cure. And now that I know what I’m facing, I’m not going to give up any time soon.
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